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Infusing Love: Careful What You Say

I had a “Hemo Mom” moment of synchronicity earlier this summer. In my last Infusing Love post, “Superheroes Need Rest Too,” I shared a story about my oldest son, Marques, being in the hospital six years ago with a port infection while I was also taking care of his four  -month-old twin siblings. Marques eventually […]

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Infusing Love: Defining Normal

“How do you do it?” “Isn’t it difficult?” “Do you feel as though you need to wrap him in bubble wrap?” “How do you handle all of it?” Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

Infusing Love: It’s About to Happen

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.  He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

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Infusing Love: Away He Goes

During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]

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Infusing Love: More than Max’s Mom

I am a modern day success story. I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I “would probably never be able to have children.” I set out to live my life as such. You know those lists of “have […]

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Infusing Love: Paying It Forward

Bleeding disorders like hemophilia can mean days of isolation, worry, and pain. This life is stressful, but sometimes days are filled with hope and promise. Thankfully, we have had many of those hopeful and helpful moments. When Benny was a baby we had the good fortune to attend a local community picnic and meet a […]

Infusing Love: Because I am a Mom

Being the mom of a child with a bleeding disorder, I am used to questions and comments from others. More often than not, they are comical and provide a bit of relief, but there is one comment that seems to be set on repeat, and I am overwhelmed by it. The comment regularly comes after […]

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Infusing Love: It’s Perfect for Us

This past April my husband, Joe, and I celebrated our 22nd wedding anniversary. Statistically speaking, I guess you could say we are one of the lucky ones. Throw in the fact we have three kids with chronic illness, now we are defying the odds. By no means do we have a perfect marriage, but what […]

Infusing Love: Superheroes Need Rest Too

Ask for help! It seems easy to do, but it takes a lot of effort. If someone would have told me, as a hemo mom, “You need to ask for help!”I could have saved myself a few unnecessary headaches. I recall a time when my oldest son, Marques, was in the hospital with a bad […]

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